Hi everyone, just hoping for a bit of advice 
I’ve almost finished radio now and have had my last appointment with the onc, apparently there is no follow up appointment. The only scan I have had to date is a partial CT scan when I i was first diagnosed back in June 2012, have since had chemo, surgery and having radio now, also on Tamoxifen. I had 13/15 possitive lymph nodes (all details are on my profile page) so I’m surprised that they did no further checks for spread - how on earth can they know it’s gone no further? Anyway I asked for a bone scan to check and he said yes but he obviously didn’t think I needed it and it’s to keep me happy…
Now the problem is I’m wondering if I should have asked for a full CT scan as well, or is it standard not to check for spread even with high posstive nodes?
Many thanks
M
Thanks Supertrouper, was’nt sure what was normal thought maybe I was worrying about things too much but I shall call the BCN later see what she says. Just don’t want to find out to late that the little bu**er has gate crashed a party he was’t invited to.
Thanks
M
Hi Sumica - I was diagnosed with invasive lobular breast cancer in May 2011 - a sentinal node biopsy removed 5 positive nodes and I was given a full CT, bone and muga (heart scan) before starting on 8 chemotherapy sessions prior to mastectomy in December where they also did a full node clearance bringing the total number of positive nodes to 11/12. Fortunately the chemotherapy worked very well and shrank the squatter considerably. I went on to have 15 radiotherapy sessions and have was discharged by my Oncologist in March 2012. Since then I have had a Dexa scan to check bone density and another bone scan as I complained about aches in my shoulder.
I do find it strange that all you have been given is a partial CT scan - but at least they have agreed to you having a bone scan. If I was you I would be nagging my team/oncologist and asking for a full CT scan.
Hi Sumica, I had chemo first (may-aug 2012) FEC-T on my grade 2 4cm IDC tumour. The FEC didn’t do much but the TAX shrank it abit, so I had a ‘partial’ response to chemo. Had mx and node clearance in Sept 2012- had 6 out of 17 nodes affected. It was only then that they gave me a CT and bone scan, which thankfully came back clear. they told me that the scans were given to people with over 3 nodes affected so although it was incredibly stressful waiting for the results, it was able to put my mind at rest that, at least in Nov, i was NED. Good luck with getting your scans. By the way I’m also on Tamoxifen and my onc said that it often works well on more the more chemo resistant cancers (something to do with their growth rate?) Lets hope so!! X
Hello Sumica, I had a lump in my armpit biopsied and as soon as that came back positive my consultant booked a CT and bone scan for me, so I had the results back even before I had my surgery which was a great relief. I thought this was standard practice once found in lymph. I’ve since had WLE and ANC and 2/16 nodes were positive. Even though we have national pathways / guidelines - although not UK wide - there does seem to be a huge amount of variation across the country and even within regions. The Golden rule seems to me to find out as much as you can about what is available and ask for / demand what you feel you need.
I’m glad that you’re now having the bone scan, hope you get the all clear.
x
Thanks for the messages everybody, I’ve just phoned the BCN and they are going to have a chat and talk to the surgeon I saw, they may then get me in to see her again for a chat.
From everything you have all said it’s not normal to have to request the scans when you have 13/15 possitive lymph nodes, I look forward to seeing what they say.
Thanks again
M
Hospitals vary, and I had bone MRI and CT after dx, with only th eMRI being after they found 15/24 nodes affercted. I was told later by an onc that they treat symptoms not scans, which really makes sense if you think about it. When I complained of back twinges 18 months after dx they were very quick with CT and bone scans whic unfortuantely confirmed mets. Now they scan fairly regularly trying to find a balacnce between checking progress and overloading you with radiation.
Nina
I do understand that they prefer to treat the symptoms and if they tell me that I don’t need the CT scan I will be more or less happy as long as it’s explained why they differ from a lot of other hospitals. I just worry that there was never a complete check for spread done so how can I put this behind me? I would just like to make sure the little bu**er is completely gone so I can get on with my life.
What was the MRI checking for?
Thanks
M
In my case it was checking lower back and came back reported as age related degeneration, at which I was very happy at teh time. Given however this is the first site of my mets 18 months later I sometimes wonder … Makes you realise how potentially useless scans can be sometimes…
Thats unfortunately true, I do know they can miss stuff that’s too small to pick up but the scan never done will pick up even less. Once I get my (hopefully) clear bone scan back I’ll try not to worry too much and just see what the future holds